Besoin d'un coup de main pour gérer votre régime PCU? En français ou en anglais, voici EasyPKU, revue et améliorée! 😃
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Need a hand managing your PKU diet? In French or English, here is EasyPKU, revised and improved! 😃
#livingwithpku — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #livingwithpku, aggregated by home.social.
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Il est important de ne pas trop manger et surveiller les calories est un moyen d'y parvenir.
Mais quand je regarde la quantité totale de calories des formules PKU, c'est un repas (550 calories). 😒
La seule façon dont j'ai trouvé de gérer cela est le jeûne intermittent (fenêtre limitée dans le temps), de ne manger que 2 repas de nourriture et de répandre soigneusement des formules pendant la journée.
#Santé #phénylcétonurie #phénylcétonurie #pku #LivingWithPKU
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It’s important to not overeat and looking at calories is a way to achieve that.
But when I take a look at the total amount of calories of just the PKU formulas, it’s a meal. (550 calories). 😒
The only way I found dealing with that is intermittent fasting (time restricted window), eating only 2 meals of food and carefully spread formulas during the day.
#Health #phenylketonuria #phenylcetonurie #pku #LivingWithPKU
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There was a great panel talk by @poconnor about living with PKU and sapropterin.
One of the questions was "are you doing well with phe levels", and one of the points was that how life changes do have a severe impact on phe levels.
As someone who moved house quite recently *AND* had a job change, I am proof that big life changes as well as changes to routine absolutely do mess up phe levels.
#pku #LivingWithPKU #ClassicalPKU #diet #lowProteinDiet #LowProtein #phenylketonuria #phenylcetonurie
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In PKU news, a good friend of mine Paul has updated his PKU Insights YouTube channel to discuss some of the new things in the future.
You can check it out here (and subscribe to the YouTuvbe channel!)
https://www.youtube.com/watch?v=iMPr16eAuGo
#PKU #PKUInsights #YouTube #phenylkeotnuria #phenylcetonurie #lowProtein #LivingWithPKU
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I really loved watching this presentation given by our very own @pcublogue! It's about his experiences with PKU. Goes to show no matter the language/nationality/culture difference, there are some things we all share the same, and @pcublogue put it brilliantly! Well worth a watch:
https://videos.pkutalk.com/w/343pZ7gFhvhrN39QGAbQmH?subtitle=en
#Phenylketonuria #phenylcetonurie #Phenylalanine #PKU #ClassicPKU #LivingWithPKU #LowProtein #LowProteinDiet
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Made myself some stir fry noodles the other day!
It was actually quite nice!
#PKU #ClassicalPKU #LivingWithPKU #Phenylketonuria #Phenylalanine #phenylcetonurie #LowProtein #LowProteinDiet
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Yay! I shared it with my daughters who have #LivingWithPKU They don't like the other one howmuchphe - costly and other reasons @soheb @skat
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Just bought these noodles from Amazon:
JAPANESE WHITE SHIRATAKI NOODLES
https://yutaka.london/products/noodles/japanese-white-shirataki-noodles/
and this is the result of the process (it was tasty, even though I clearly forgot soy sauce)
#pku #livingWithPKU #classicalPKU #phenylketonuria #lowProtein #vegan #food #ClassicalPKU #phe #vegetables #vegetarian #cooking
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I have done it!! I have made the perfect Mogo Chips!!
Mogo is basically Yuca/Cassava, and you can get pre-cut mogo chips (as seen here): https://www.sanjanafeasts.co.uk/2023/06/mogo-chips-yuca-fries-or-cassava-fries-bomb-sauce/
It's super simple to make, too!
1. Boil frozen mogo chips for 15-20 mins until mogo chips are soft in the center (like potato, you got to poke them with a butter knife to see if it's properly cooked or not)
#pku #livingWithPKU #classicalPKU #phenylketonuria #lowProtein #vegan #food
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Trying to be a grown-up with his own house and having to deal with PKU has it's challenges - like trying to find new, inventive ways to have low protein food *and* have my exchanges all in one go, three times a day, every single day.
This is going to be a thread 🧵 - feel free to read more below 👇
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You have no idea how glad I am to be having these new Galen microtabs!!
And the cup is actually easier to put in my mouth than the lid ever was, so props for that!!
What does everyone else think about the new tablets?
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If you are wondering “what is PKU?”, my good friend @poconnor has wrote a book on just that!!
It's called Living with PKU, and you can get it here: https://pigpen.page/books/ (£15 for paper back, £5 for eBook)
Between June and July, half of the profits go to the NSPKU charity (https://nspku.org) - a charity that does so much for PKU folks!
Please check out the book (and boost these posts)! Thank you!
#phenylketonuria #LivingWithPKU #nspku #books #bookstodon #boost #boostswelcome
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Here is a great blog post about #LivingWithPKU by Dan Elmer:
https://thetruthaboutlifewithpku.home.blog/2023/03/29/fight-or-flight-pku/
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To all who celebrate, Easter greetings, especially to those today who have (or have kids with) medical dietary restrictions on chocolate.💛🐣☀️🌺 #PKU #LivingWithPKU #PKUparenting #EasterSunday2023 #EasterSunday #EasterEgg #chocolate #AnCháisc